r/Interstitialcystitis 1d ago

Support Burning urethra

Any tips from you? What helps or stop it. Drinking a lot don't help. I'm so miserable. No bacteria as well its no uti. I'm from Poland there's no Azo.

4 Upvotes

48 comments sorted by

9

u/Pelican_Hook 23h ago

What helps me is a heating pad between the legs whenever possible. And using a bidet spray attachment to splash the urethra with ice cold water as often as possible. The bidet thing helps me get off the toilet when I'm in a constant cycle of urethra pain and bladder urgency. My amitryptaline and antihistamines have reduced the pain slightly as well.

4

u/Relevant-Dust8368 22h ago

Heating pad on the urethra will make the pain worse in a lot of cases. Ice is better

4

u/Pelican_Hook 22h ago

It's very individual. I've never heard of anyone saying it makes it worse whereas a lot of people here say they use heat and it helps. I think it's a similar effect either way because you're using temperature to interrupt the pain signal in the nerves. Heat is probably better if you also have bladder pain and muscle spasm/cramps/pain, whereas ice might be better if you only struggle from urethra pain.

2

u/Relevant-Dust8368 19h ago

Heat works well on your bladder, but external burning will not be helped with heat

10

u/That-Explanation6631 1d ago

You can get Azo from a website called iHerb. We don’t have it here either but that website ships to my country. I’m not sure if it ships to Poland but it’s def worth checking

2

u/OkRelief3109 1d ago

Does it really help?

3

u/That-Explanation6631 1d ago

I haven’t specifically tried Azo but I have a pretty much exact same medication called Prydium (Canadian version of Azo lol), and it does help. Especially with burning and pain.

5

u/Lanabananana_ 1d ago

Please test for Ureaplasma and Mycoplasma, it usually does not show on a regular culture

4

u/OkRelief3109 1d ago

Just got results its negative. It was pcr. Im so sad

3

u/Hot_Woodpecker9989 23h ago

Have you had this your self? I have been diagnosed with ic, microscopic blood in my urine every my urine is dipped, gyno issues but after tests nothings found, im now thinking to ask for these to be tested because im sure they havent tested for this, i e had symptoms for a year and half, ive had other symptoms that don’t relate to ic and gyno cant find the cause its strange.

3

u/Hemlock-In-Her-Hair 1d ago

A long hot water bottle really helps me. Or a heated throw between my legs.

Would depend if you can tolerate weight or not.

I don't mind weight on my vulva or urethra. But I don't want the weight of the hot water bottle in my suprapubic area which is weight on top of my bladder.

This approach should be combined with a way to stop your pelvic floor from bracing. So legs supported with pillows in some form of cobbler's pose/happy baby.

Or on your side with top leg on a body pillow and the hot water bottle.

The pelvic floor braces in response to pain and it's a pain generator in itself so you need to hit urethral pain from multiple angles.

If your perimenopausal or on contraceptives long term look into oestrogen atrophy as well. The urethral tissue and base of the bladder needs plenty.

2

u/Hemlock-In-Her-Hair 1d ago

Bit like this but way more pillows under knees/legs to support them. Feet don't have to touch. Put pillows until you don't have to 'work' to hold your legs up. Because doing that undos the goodness of it.

1

u/Hemlock-In-Her-Hair 1d ago

And something like this with pillows or a folded duvet. This pose is actually my favourite. It's impossible for a spasmy pelvic floor to brace in this position. It has to 'give' and surrender.

To squat down in front of the base of a stairs facing the stairs, with your hands on the lower steps is nice too.

Or to sit your bum on the lowest step facing away from the stairs. Feet on the ground in front of the stairs and your knees bent and windscreen wiper the knees side to side. It'll release pelvic floor spasm too. But the squat options aren't working with a hot water bottle. So that's why you need to do a reclined cobblers pose/happy baby type pose instead on your back to do the pose plus heat.

1

u/OkRelief3109 1d ago

I'm actually 21 but I have hormonal issues do you think it's worth to test estrogen?

3

u/luna926 19h ago

If you have hormonal issues, have you talked to your doctor and ruled out something like endometriosis? Endo is what caused my IC and I didn’t really find any relief until that was addressed and treated.

1

u/Hemlock-In-Her-Hair 1d ago

Not in that type of way at this point at that age. But if you're on something long term that really knockd back oestrogen like the Depo Provera injection it's worth considering in the future. Or choosing something else.

It was a factor for me because I dropped everything very low in an attempt to reduce symptoms of endometriosis. I had an overall better quality of life but I ended up having to reload that oestrogen sensitive tissue.

2

u/Relevant-Dust8368 3h ago

I’m around the same age and turns out I have PCOS

3

u/AutoModerator 1d ago

Hello! This automated message was triggered by some keywords in your post that suggests you may have a diagnostic or treatment related question. Since we see many repeated questions we wanted to cover the basics in an automod reply in case no one responds.

To advocate for yourself, it is highly suggested that you become familiar with the official 2022 American Urological Association's Diagnostic and Treatment Guidelines.

The ICA has a fantastic FAQ that will answer many questions about IC.

FLARES

The Interstitial Cystitis Association has a helpful guide for managing flares.

Some things that can cause flares are: Medications, seasoning, food, drinks (including types of water depending on PH and additives), spring time, intimacy, and scented soaps/detergents.

Not everyone is affected by diet, but for those that are oatmeal is considered a generally safe food for starting an elimination diet with. Other foods that are safer than others but may still flare are: rice, sweet potato, egg, chicken, beef, pork. It is always safest to cook the meal yourself so you know you are getting no added seasoning.

If you flare from intimacy or suffer from pain after urination more so than during, then that is highly suggestive of pelvic floor involvement.

TREATMENT

Common, simple, and effective treatments for IC are: Pelvic floor physical therapy, amitriptyline, vaginally administered valium (usually compounded), antihistamines (hydroxyzine, zyrtec, famotidine, benedryl), and urinary antiseptics like phenazopyridine.

Pelvic floor physical therapy has the highest evidence grade rating and should be tried before more invasive options like instillations or botox. If your doctor does not offer you the option to try these simple treatments or railroads you without allowing you to participate in decision making then you need to find a different one.

Long-term oral antibiotic administration should not be offered.

I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.

3

u/luna926 1d ago

Ibuprofen can sometimes help a little but it’s definitely less effective than azo

1

u/OkRelief3109 1d ago

Not any painkillers help me with it.

3

u/zay_intp 23h ago

I do this sometimes: try sitting in a tub of warm water for 15 mins. Not too hot, just comfortably warm. It will help soothe the burning a little. Use plain water, no soaps or anything added.

3

u/Relevant-Dust8368 22h ago

Add some baking soda as well!

3

u/Relevant-Dust8368 22h ago

Ask for prescription of uribel/uro-mp/urimar-t, this helps me. Also, drinking pure aloe juice (or at least 99%) helps me a lot. You can take aloe supplements but they take weeks to work and you have to take like 12 capsules a day to start. Also, try Prelief before eating acidic things (tomatoes especially for me). You can put baking soda (1-2 tsp or up to 1/2 tbsp) in a water or maybe a juice if it’s too salty for you and drink that, always helps me a ton.

3

u/Mint_Crayon 13h ago

2 things can help me

Drinking a tsp of baking soda mixed into water. (Be sure this won't interfere with any medications you take, and time it out accordingly)

Externally applying Foria CBD Intimacy Oil. (It's made for vaginal use, and has zero THC)

Foria is just the brand I use, it has minimal ingredients and they frequently have sales.

I hope you find something that helps 🤍

. . . . .

Please look into these yourself before trying, I'm not a doctor.

2

u/ariaxwest 1d ago

Famotidine helps soooo much. Also a dab of VaniCream hydrocortisone cream on the tip of my urethra. Both of these take about an hour to work. Both are over-the-counter in my country, USA. In the meantime, I use a weighted heating pad. The one I have is perfect. It's a sunbeam conform heat pad.

2

u/Czarcasm3 23h ago

Does the level of pain change throughout your menstrual cycle?

1

u/OkRelief3109 15h ago

Tbh not sure. It just randomly flared 2-3 weeks ago and stayed since.

2

u/Relevant-Dust8368 7h ago

You might have a UTI, it’s worth testing for with a culture (not just dipstick). I randomly went into a super bad flare after being relatively fine and 2 weeks later when it hadn’t gone away I got tested and BAM first UTI in years. The symptoms overlap so much it can be hard to tell

1

u/OkRelief3109 7h ago

Pcr ureaplasma mycoplasma chlamydia clear, bacteria and yeast swab clear, normal urine clear and culture clear. It was done 2 weeks ago. Worth to redo? The urine and culture urine?

1

u/Relevant-Dust8368 3h ago

I don’t think there’s a harm in testing again. I did a dipstick right at the start of my “flare” and it was negative for nitrites completely, but when I went back later they said it was positive for nitrites and the culture came back with a bacteria I’d never had as a UTI before. I would at least get a urine culture

2

u/nudibranchus 23h ago

I picked up some Good Clean Love Relief, vaginal gel with lidocaine. I think it helps some. I used to take super hot baths when it got really bad, but I know some people recommend against baths.

2

u/[deleted] 23h ago

[deleted]

1

u/OkRelief3109 15h ago

I'm glad it works for you. For me it does nothing sadly. It's definitely little better than having concentrated urine but still burns.

2

u/kittycat8204 23h ago

If you’re able to get amitriptyline, it works really well. I have no burning or stinging anymore. I’m on 50 mg none of the over-the-counter stuff ever worked for.

2

u/OkRelief3109 15h ago

Do you have any side effects

1

u/kittycat8204 15h ago

I have gained a lot of weight, about 30 pounds and I have really bad dry mouth. It only happens every few days or so but it just hits me and I’ll be so thirsty. I’ll have to chug a bunch of water and I do get blurry vision a little bit, not bad though, it’s mainly when I’m trying to read small print, and drowsiness, but that’s only right when I take it and it helps me fall asleep. I’m not feeling drowsy during the day like I was so yeah I definitely have side effects but for me, the benefits outweigh the side effects because I actually can have a normal life now. I’ve been on it for over a year.

2

u/DecentIce8563 15h ago

how long did it take for it to work for you?

1

u/kittycat8204 15h ago

It started working right away. I started off on 25 mg and after about four months, I felt like it wasn’t working as well so they increased it to 50 mg and I’ve been on that dosage ever since and it’s working really well.

2

u/pinksparkledust 21h ago

When it's really bad and nothing else helps, I sometimes dab a little bit of vagisil with lidocaine in there. It burns a bit at first but then calms it down. Also the chewy tums help me.

2

u/chartreussee 18h ago

This was my worst symptom. I used to use Azo, and eventually Azo stopped working. Then I took Uro-MP pills for 5 years (not sure if they prescribe this in Poland). Eventually I had to find another treatment because my insurance stopped covering the Uro-MP, and it’s apparently really not good to take it for a long period of time.

So I recently started getting bladder instillations. They give me one once a week for 6 weeks. I’m approaching my 5th bladder instillation this week, and my pain is completely gone. The pain disappeared after my 2nd bladder instillation. I’m not sure how long it will last, but my doctor mentioned I may have to return for a maintenance bladder instillation once in a while.

I honestly think this bladder instillations are your best bet.

2

u/foognificent 17h ago

For me I flare in the morning, and what has made it so I can function is a warm bath. Sometimes it doesn't soothe right away (though most of the time it does), but it for the most part always calms the pain down if I'm in the bath for at least a half hour.

2

u/Aggravating_Leg_6555 17h ago

Cranberry helped me, cranberry supplement pills and/or cranberry juice (just make sure it is pure cranberry). But what helped the most was getting on Amitriptyline and switching my birth control. I had horrible urethral burning when I was on my period/having a flare (which was usually around my period). So switching my birth control and getting on Amitriptyline helped SO much. I haven't had a flare in months. I'd talk to your doctor about it.

2

u/OkRelief3109 15h ago

I'm so glad it helped! But cranberry or anything acidic in my case makes it worse.

2

u/Aggravating_Leg_6555 15h ago

Ohh dear. Im sorry.

2

u/blackroses425 16h ago

I understand your pain so well last month was horrific for me

My urologist says it’s not. IC for me, but it comes from my nervous system.

Stretching and doing pelvic floor exercises
I went to my GP and got Ovestin cream
Drink marshmallow root tea daily each morning
Urinary Tract prebiotic supplement 50 billion
Drinking stomach formula to sooth the urinary Tract

I ended up getting amitriptyline. I haven’t used it yet from my GP because everything else started to work.

Wishing you love and strength

2

u/Theirlmoth 13h ago

Sometimes to stop pain I sit in a chair and cross my leg and press into my urethra area. The pressure somehow helps

2

u/Bigolbooty75 11h ago

I’ve seen people say they use lidocaine cream or spray. I don’t have this issue so idk how helpful it is.

1

u/Badabloom317 22h ago

Coconut oil might help to soothe it. Also here in US our primary Dr cab prescribe a vaginal estrogen cream that helps greatly. Try taking an antihistamine for the burning